On 8/11, the @CDCgov revised #COVID19 guidance as to “not disrupt daily life." These changes are reckless.

18M+ w/ #LongCOVID experience significant daily disruptions to life. This revision indicates those casualties are acceptable in exchange for comfort. #StoptheSpread 🧵 1/7
We are calling on the @CDCgov to recognize the long-term, systemic health & socioeconomic impacts caused by the disability faced as a result of #LongCOVID & its associated conditions, a result of the initial #COVID19 infection.

Preventing infection prevents #LongCOVID.
2/7
The U.S. has seen over 1 million deaths due to #COVID19 & 1 in 5 infected develop #LongCOVID.

At current *documented* case counts, the U.S. has ~18 million #Longhaulers. The @CDCgov 's own data estimates only 1 in 4 cases are actually documented. (4x as many w/ #LongCOVID).
3/7
As the first to report on the economic impacts of #LongCOVID, we have continued to build upon our estimates as data evolves.

In our data, ~40% reported needing SSD. At current case counts & when expanding out to the population, that is ~ 7.4 million people.
4/7
44% reported being completely out of work (8,133,571 million people at current case counts) with 67% for over a year.

51% reported having to reduce working hours (9,427,48 million people at current case counts) with 63% for over a year.
5/7
Our current estimate of the annual cost as a result of #LongCOVID is $269 Billion!

With over 100,000 cases daily, we will see 20,000 #Longhaulers (another 8,000 needing SSD), & increase our annual costs by $728 million, per day.
6/7
#LongCOVID & its #disability will continue to "disrupt daily life" for millions of #Longhaulers, their families, & their communities.

The @CDC's messaging will cost millions more their health & futures, & have decades to generational impacts. Do better. #StoptheSpread
7/7
Infographic w/out typo

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More from @C19LH_Advocacy

Aug 1
The U.S. Department of Labor is asking YOU the important questions!

Please Vote For Us & Our Recommendations!
longhauler-advocacy.org/c-19lap-recomm…

Recommendations put forward for the #LongCOVID community came from your participation over the last 2.5 years! Please help elevate those needs! Image
You do need to register to vote which you can do here
longcovidatwork.ideascale.com/a/register

We have put together a video " C-19LAP: Navigating the Department of Labor (DOL) Long COVID Online Dialogue" which you can also find here!
If you feel @C19LH_Advocacy should be involved in informing stakeholders,we need you to go vote for us! Unfortunately, votes will be considered, and we do want to ensure we have a seat at the table to advocate for you! bit.ly/C19LAPDOL1 Image
Read 15 tweets
Jul 8
This month, we’re celebrating #DisabilityPride, recognizing how far we’ve come & also how far we have left to go to secure justice & equity for all people with #PWD in the U.S. Join us all month long to learn more & to celebrate the ADA anniversary later in July! #ADA2022 #C19LAP
This month, we’re celebrating the rights promised by the ADA & reflecting on what more must be done to make its promises a reality. 32 yrs later, disability remains a cause & consequence of poverty in the U.S. It’s time to secure economic justice for all disabled people! #ADA2022
According to polling from @TCFdotorg @DEJCollab & @DataProgress, 8 in 10 voters across the political spectrum support updating Supplemental Security Income’s outdated asset limit to help more people w/ disabilities thrive. Learn more: tcf.org/content/commen… #ADA2022
Read 9 tweets
Mar 2
Tonight, millions of #Longhaulers were hoping that @POTUS would become a champion for #LongCovid by utilizing his platform to create more awareness & educate the American people about the sheer devastation Long Covid has caused & will continue to cause for decades. He didn't.
1/
We hoped @potus would continue to emphasize mitigation efforts being essential in our battle against #COVID19 & #LongCovid. Instead, Americans were told they could remove their masks as we move back towards a "safer normal" & that those vaccinated & boosted are protected.

2/
For #Longhaulers, there is no "return to normal." We also know that people can still get infected with #COVID19 even if vaccinated. While vaccination helps prevent severe disease during acute infection, we KNOW that #LongCovid most commonly occurs in mild-moderate cases.
3/
Read 18 tweets
Feb 28
Please check out our piece on @NBCNightlyNews tonight!

Awareness & education are key in propelling the #LongCovid & #chronicillness community forward. #Longhaulers in the millions are being failed in healthcare & social supports.

Options have run out. #LongCovidActionNow
1/5
We want to thank @NBCNightlyNews @CynthiaMcFadden & @KitRamgopal for highlighting the struggle #longhaulers face trying to access benefits.

We hope to see @POTUS address the devastation of #LongCovid in the upcoming #SOTU address & take immediate action to help millions.
2/5
Our founder & president (featured in the story @K_Bishof ) can be reached at admin@Longhauler-Advocacy.org or you may check out & contact us through our website longhauler-advocacy.org or on Facebook facebook.com/groups/c19lap/
3/5
Read 5 tweets
Jan 27
We want to thank MN Governor @GovTimWalz for his latest supplemental budget recommendations which include approximately $3 million per year to establish a permanent state office for #LongCOVID!

🧵1/
We are unsure if this is a result of a request we and 2 other orgs sent a few months ago, but we are eager to collaboratively work together on this and help educate those who will be involved, once this budget is approved and the program is in place.

2/
In order for it to go into effect, the Minnesota state legislature must pass an authorizing bill and appropriate money during it's 2022 legislative session,which runs from January 31 to May 23.

PLEASE CONTACT YOUR MN LAWMAKERS URGING THEM TO SUPPORT AND PASS THIS!

2/
Read 7 tweets
Nov 17, 2021
For those who asked, this study is accepting those hot local to Miami whether you are still in Fl or are willing to travel to participate
(see parts 2-5 for more info)
Mention my name when reaching out (Karyn).
1/5
#FBLC #LONGCOVID #LONGHAULER #PASC #RESEARCH #STUDY #UofMiami
For those new to this. This is my myocarditis doc at university of Miami doing this study.
-Covid attacks our endothelium, which we have in every aspect of our body. We complain of blood pooling, bad veins, easy brushing, poor circulation, hr and bp issues.
2/5
A lot of this is likely from endothelial dysfunction which I believe *may* be the trigger of pots or dysautonomia in many of us.
- I only grew 1 of 6 tubes back showing endothelial dysfunction.
3/5
Read 5 tweets

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